Dementia in Palliative Care

May 2016

Sue Johnson, Karen Rose, Lynsey Bates

St Luke’s Community Nurses

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Prevalence

• There are 850,000 people living with dementia in the UK .

• By 2025 the number is expected to rise to over one million.

• In the UK it is estimated that 62% of people with dementia

are female and 38% are male.

• In the UK over 40,000 people under 65 years of age have

dementia. (Alzheimer’s Research UK , March 2016)

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St Luke’s Referrals

• From April 2015 -.January 2016 there were 1,299 patients

referred to St Luke’s Community Team.

• 82 of these referrals had dementia within their diagnosis,

which equates to 6.4% .

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A daughter’s perspective

THE WAITING ROOM on

Vimeo

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‘Cracks in the Pathway’

Care Quality Commission(CQC)

Report, October, 2014

The CQC carried out a thematic review of people living

with dementia as they moved between care homes and

acute hospitals.

They found that the quality of care for people living with

dementia varied greatly and that it was likely that they

would experience poor care at some point.

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Recommendations of CQC

• People with dementia, their families have the right to be

treated with respect, dignity and compassion.

• Ensure that care is safe, effective, compassionate and high

quality.

• Personalized approach is key to high quality care.

• Care should be delivered by knowledgeable and skilled

staff who have time for the individual needs of the person

with dementia.

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Other CQC recommendations

• Comprehensive assessments should be carried, updated

and then shared when someone moves between services.

There should be an open and transparent culture, focused

on the needs of the individual.

• Willing to look at innovative, creative solutions.

• Seeking out good practice to adopt and constantly

keeping its own service under review.

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Dementia

• Dementia is not a disease in itself. Dementia is a word

used to describe a group of symptoms that occur when

brain cells stop working properly.

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Types of dementia

• Alzheimer's – Memory loss with slow insidious onset,

language impairment, failure to recognize relations and

corers. Most common cause of dementia.

• Vascular – Often stepwise progression, memory loss,

recent stroke,TIA,Myocardial Infarction, Focal neurological

signs. Second most common cause of dementia.

• Lewy Body - Fluctuating memory impairment, prominent

visual hallucinations, repeated falls. Third most common

cause of dementia

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…Types of dementia

• Frontotemporal dementia . A relatively rare form of

dementia accounting for less than 5% of all dementia

cases . It usually affects people between the ages of 45-

64. The frontal lobes regulate our personality, emotions

and behaviour, as well as reasoning, planning and

decision making.

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How is diagnosis made

• Referral to Memory Clinic

• Physical examination

• Memory tests

• Brain scan

• Blood tests

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Pharmacological treatment (no cure)

• Donepezil

• Aricept

• Rivastigmine

• Galantamine

• All these medications try to slow down the progression of

the illness.

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Early signs of dementia

• Loss or lapse of recent memory

• Mood changes or uncharacteristic behaviour

• Poor concentration

• Problems communicating

• Getting lost in familiar places

• Making mistakes in previously learned skill

• Changes in sleep pattern or appetite

• Personality changes

• Visio-spacial perception issues

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Problems with communication

• Ability to understand and use language accurately/

appropriately may be affected.

• Difficulty remembering words or using them accurately

• Repetition of thoughts and lack of coherence

• Ability to communicate may vary from ‘day to day’

• Other conditions may affect their ability to communicate

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How the professional should

communicate

• Maintain eye contact

• Speak clearly in short sentences

• Simple vocabulary / avoiding jargon

• Be patient and allow time to answer

• Try not to finish a sentence unless asked to do so

• Avoid negative statements – ‘Don’t’

• Repetitive questions can be challenging-try to respond as

if it is the first time.

• Whatever is said it is usually best to accept and not argue.

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… Communication

• May need to frame questions as yes or no

• Listen carefully to grasp meaning or tone

• Use non verbal communications i.e. gestures, facial

expression or written communication

• Use images, pictures, symbols or music to enhance

understanding

• Refer to communication guidelines in care plan

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Promote independence / activity

• Encourage to maintain activities they enjoy

• Respect individuals needs and preferences

• Deliver person centered care with patience, dignity and

respect.

• Support people to make their own choices e.g meals they

enjoy.

• Do things with the person rather than for them

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... Promote independence/activity

• Support to self care for as long as possible.

• Use signage to support if helpful to individual.

• Support to access mainstream services such as shops,

going to bank if appropriate.

• Ensure there is adequate means of hydration and nutrition.

• Presume a person has capacity to make decisions by

themselves unless proved otherwise.

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‘This is Me’ document

• A tool intended to provide professionals with information

about the person.

• It enables those involved to see the person as an

individual, and so deliver more person centred care

• It tells Health Professionals their needs ,preferences likes,

dislikes and interests.

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‘This is Me’ document

• This will enhance the care and support given, while the

person with dementia is in an unfamiliar environment.

• It can help to reduce distress for the person with dementia

and their carer.

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Recognising distress

• Diffuse a person’s anxiety and support their understanding

of events they experience

• Unfamiliar surroundings can lead to uncharacteristic

behaviour that is difficult to manage

• Access to structured activity/personal interaction supports

people to participate socially and reduce frustration

• REMEMBER that distress may be a sign of an unmet need.

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NICE Guidelines

• NOTE : NICE 2006/08 guidelines state that antipsychotic

medication to reduce challenging behaviour should only be

given in exceptional circumstances and should be regularly

reviewed .

• The suggestion is that for most people they are counter

productive

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Managing distress…..

• Support in a person centered way to help identify triggers:

consider if unmet need is cause

• REMEMBER – all behavior is a reaction to a feeling- try

and understand why someone may feel the way they do.

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Possible causes of distress

• Misunderstanding of their environment

• Feeling frustrated unable to be understood

• Fear

• Loss of inhibitions , Decreased awareness of appropriate

behaviour.

• Responding to what they feel to be over controlling care

• Past history/experiences

• Pain

• Professional’s responses to their actions

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Other causes of confusion

• Infection

• Urinary retention

• constipation

• Hypercalcaemia

• Nicotine withdrawal

• Deafness

• Underlying mental health problems

• Low sodium

• Brain metastases

• CVA

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Pain assessment tools

• DisDAT – disability distress and assessment tool

• PAINAID scale tool

• Abbey Pain Scale

• Doloplus

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Family and carer issues

• Upset, frustration / embarrassment can be as distressing

for loved ones

• Family friends and carers need to maintain their own

health and well being

• They often need support to develop coping strategies.

• Planning for the future .Involvement in advanced care

planning/power of attorney .

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….Family and carer

• Dementia is often distressing for their relatives/friends

• Encourage them to be involved in shared activities with the

person with dementia.

• Encourage carers to maintain social contacts for

themselves as well as the person with dementia.

• Intervention should occur before they reach breaking point.

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Avenues of support for carers

• Memory Clinic

• Dementia Cafes/dementia Day Care/respite

• Sheffield Carers Centre – courses for carers

• Alzheimer’s Society in Sheffield

• Age UK Sheffield

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…..Avenues of support for carers

• Carers entitled to a ‘Carers Assessment’ to look at carers

needs/impact on carers life

• ’Making Space Hubs’ (a new initiative) - activities for

people with dementia- enabling some respite for carers

• Sheffield Dementia information Pack

• National Dementia Helpline – 0300 222 1122

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Advance care planning

• Lasting Power of Attorney

• Mental Capacity Act – appointing IMCA if no NOK

advocate (Best Interest Meeting)

• Advance Decision to Refuse Treatment

• Preferred Priorities of Care Document

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Importance of MDT approach

• Aim for seamless approach between different teams

/agencies

• All practitioners should liaise/work together in order to

support personalised care.

• Ensure continuity of the carers involved .

• Co-ordinated support

Poem – ‘Why I Wonder’

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Further Reading

• Dementia Reconsidered: the person comes first (Tom

Kitwood,1997)

• Person – centred dementia care : making services better

(Brooker,2006)

• Enriched care planning for people with dementia: a good

practice to delivering person-centred care (May,Edwards &

Brooker,2009)

• NICE GUIDELINES (2006) Dementia : supporting people

with dementia and their carers in health and social care

Thank you for listening and

Participating !